Petition: That the ME Association leave the CMRC

[lilpink]

forget that there's lots of them and only the one of him

..and there was I thinking he was supposed to be one of us. Mea culpa.

 

[lilpink]

Fwiw ... and to bring this back to its beginning, I understand some people have been able to vote from outside the UK (after all our plight is international and the BPS school have felt no concern about crossing national borders) by playing around with the zip code. Also this is a petition open to anyone, you don't have to be a member of the MEA to add your name.... we all at suffer at the hands of this collusion, even if not all of us recognise it at this moment in time.

https://you.38degrees.org.uk/petitions/me-association-to-leave-the-cmrc?just_launched=true

 

[Stewart]

..and there was I thinking he was supposed to be one of us. Mea culpa.

Well, he certainly doesn't get treated like one of us. Unless *all* PR contributers are supposed to be on the receiving end of the message board equivalent of regular punishment beatings...

Err.. we're not, are we? Please tell me we're not.

 

[trishrhymes]

regular punishment beatings...

I would rephrase that as 'polite disagreement on one issue and lots of praise on other issues'.

 

[lilpink]

Err.. we're not, are we? Please tell me we're not.

And this disease isn't punishment enough let alone our charities canoodling with the likes of EC?

 

[Skycloud]

.... we all at suffer at the hands of this collusion, even if not all of us recognise it at this moment in time.

And this disease isn't punishment enough let alone our charities canoodling with the likes of EC?

I'm beginning to get the impression you object to the MEA being in the CMRC...

Seriously, the use of the word 'collusion' suggests that CS and the MEA are intentionally and knowingly acting in secret agreement with others in the CMRC to undermine patients best interests. Is that really what you are saying?

 

[Stewart]

I can see that my attempt to slightly lighten the mood with a self-depreciating mildly humorous comment has been less successful than I would have hoped.

I would rephrase that as 'polite disagreement on one issue and lots of praise on other issues'.

'polite - and occasional impolite - disagreement on one issue (with ever increasing regularity) and lots of praise on other issues (but of late, nowhere near as much praise as disagreement - both polite and impolite).'

 

[daisybell]

@charles shepherd I for one am very sorry you feel this way. From what I have read, I don't see the evidence for people being anti-you or the MEA, aside from perhaps one or two individuals. I don't know if I speak for the majority, but expect that others feel the same - I greatly admire the vast majority of the work you do, and I also think it is admirable that you come on to this forum to engage. However, I don't feel that I have to support the way the everything is done by the MEA or its stance on every issue. I also feel that I have the right to state my opinion.

Of course you have every right to ignore me - but it does feel to me that the MEA is not good at taking on board opinions that differ from its own. That's not a particular issue with the MEA - lots of organisations, indeed probably most, would be like this. But - that doesn't mean it is a good thing. Fighting one's corner does often result in being backed into it - and sometimes the right thing to do is really reflect on whether or not it is the right corner to be in at the current time.

 

[charles shepherd]

I know that some people on PR will not believe or like what I am going to say below but I will have a go...

I can assure people on PR that MEA trustees do take very careful note of what is being said on social media and in correspondence to the MEA on controversial topics such as our membership of the Board of the CMRC

In fact, our membership of the Board of the CMRC was being discussed by MEA trustees today

I think I am the only medical adviser to a UK ME/CFS charity who is willing to take part in their social media discussion forums

When I robustly defend a decision that has been made by MEA trustees that some people (mainly non members of the MEA) do not like it is not because trustees have not listened to what people are saying

It is because our trustees have had a full and frank discussion about the issues involved and made a policy decision on where we stand

Having done so, I am here to explain why and, if necessary, robustly defend that decision - which I will continue to do

CS

 

[daisybell]

Fair enough...thank you.

 

[charles shepherd]

After CMRC meetings @charles shepherd , do you enjoy a few drinks and laughs with Esther & Stephen?

As the joke in Private Eye said, "Treples all round!"

I would leave satire to the very competent hands of Private Eye!

Off topic - I used to advertise my Soho minivan removal service in the Eye back in the esarly 1970s.....

 

[lilpink]

I'm beginning to get the impression you object to the MEA being in the CMRC...

Seriously, the use of the word 'collusion' suggests that CS and the MEA are intentionally and knowingly acting in secret agreement with others in the CMRC to undermine patients best interests. Is that really what you are saying?

I'm beginning to get the impression (as this is not the first time it has happened) that words I have written in separate and different contexts are conjoined to try to force a narrative into my mouth which isn't mine. I find that rather odd, indeed disturbing, in the context of a patient forum. What I have pondered is this:

Canoodling versus collusion ....... (my colloquial observation of) TACIT ENDORSEMENT versus whatever you are trying to imply I'm saying. I've never heard 'collusion' and 'canoodling' ever being used as a synonym of each other before. Quite bizarre. The OED seems to agree with me:

"collusion

NOUN
1‘there has been collusion between the security forces and paramilitary groups’

SYNONYMS
conspiracy, connivance, complicity, intrigue, plotting, secret understanding, collaboration, scheming".

Nope..no 'canoodling' there. So that's that accusation out of the way.

But consider this.....

1. So the CMRC are intent on working towards all this biomed research are they? So much so that they're after 10,000 adults and 2000 child recruits for their MEGA project, a cohort size that matches very closely the size of the NOD database they have already collected (in some/many/most cases without informed consent) stuffed full of their precious psych data to compare any MEGA results with. Mmmmm....


2. Also, let's not forget the BPS School's ever expanding MUS agenda. You (they) may not care much about other patient groups but at least have the sense to realise that they are expanding and not reducing the role of the psych model in medicine to the detriment of millions of people. If in any doubt then look at the PRINCE trials led by Trudie Chalder. We're in cloud cuckoo land if we think that for one minute these people are going to give up on the psych model when biological research turns up any results.....at the very best they will be making even greater efforts to incorporate any new discoveries into their mind/body interaction hypothesis. And don't lose sight of why this is so important - to save the NHS billions of £s in efficiency savings.


3. And how quickly you forget 'A day with the MUPPETS' - MEA not only tacitly endorsing (aka 'canoodling' with) BPS school research (including MUS research) and EC's libel of DT but also EC's involvement with this event as key speaker.

 

[charles shepherd]

I'm beginning to get the impression (as this is not the first time it has happened) that words I have written in separate and different contexts are conjoined to try to force a narrative into my mouth which isn't mine. I find that rather odd, indeed disturbing, in the context of a patient forum. What I have pondered is this:

Canoodling versus collusion ....... (my colloquial observation of) TACIT ENDORSEMENT versus whatever you are trying to imply I'm saying. I've never heard 'collusion' and 'canoodling' ever being used as a synonym of each other before. Quite bizarre. The OED seems to agree with me:

"collusion

NOUN
1‘there has been collusion between the security forces and paramilitary groups’

SYNONYMS
conspiracy, connivance, complicity, intrigue, plotting, secret understanding, collaboration, scheming".

Nope..no 'canoodling' there. So that's that accusation out of the way.

But consider this.....

1. So the CMRC are intent on working towards all this biomed research are they? So much so that they're after 10,000 adults and 2000 child recruits for their MEGA project, a cohort size that matches very closely the size of the NOD database they have already collected (in some/many/most cases without informed consent) stuffed full of their precious psych data to compare any MEGA results with. Mmmmm....


2. Also, let's not forget the BPS School's ever expanding MUS agenda. You (they) may not care much about other patient groups but at least have the sense to realise that they are expanding and not reducing the role of the psych model in medicine to the detriment of millions of people. If in any doubt then look at the PRINCE trials led by Trudie Chalder. We're in cloud cuckoo land if we think that for one minute these people are going to give up on the psych model when biological research turns up any results.....at the very best they will be making even greater efforts to incorporate any new discoveries into their mind/body interaction hypothesis. And don't lose sight of why this is so important - to save the NHS billions of £s in efficiency savings.


3. And how quickly you forget 'A day with the MUPPETS' - MEA not only tacitly endorsing (aka 'canoodling' with) BPS school research (including MUS research) and EC's libel of DT but also EC's involvement with this event as key speaker.

On learning about the MUPPETS meeting in Exeter we sent in an immediate complaint to the organisers at the Devon and Exeter Hospital:

http://www.meassociation.org.uk/201...with-title-for-todays-conference-18-may-2017/

This resulted in a very rapid retraction but we never discovered who was responsible at the South West Paediatric Club for using this stupid tile for a paediatric study day

This meeting has nothing to do with MEA membership of the Board of the CMRC

CS

 

[lilpink]

This meeting has nothing to do with MEA membership of the Board of the CMRC

You consistently fail to understand the dynamic which is probably (almost certainly imo) at work in that MEA membership of the CMRC tacitly endorses all of these behaviours. You cannot separate them no matter how vociferously you protest. Trishryhmes analogy using creationism versus evolutionary science is the best I've heard to describe this construct in the simplest of terms (http://forums.phoenixrising.me/inde...association-leave-the-cmrc.52762/#post-874151). That you are unable to grasp this very simple concept makes the situation even more alarming.

 

[charles shepherd]

You consistently fail to understand the dynamic which is probably (almost certainly imo) at work in that MEA membership of the CMRC tacitly endorses all of these behaviours. You cannot separate them no matter how vociferously you protest. Trishryhmes analogy using creationism versus evolutionary science is the best I've heard to describe this construct in the simplest of terms (http://forums.phoenixrising.me/inde...association-leave-the-cmrc.52762/#post-874151). That you are unable to grasp this very simple concept makes the situation even more alarming.

This meeting was organised by the South West Paediatric Club - which is based at the Royal Devon and Exeter Hospital in DEVON

One of the SWPC organisers of the meeting chose to use a very stupid title for the study day

The MEA was first off the block to send in a formal complaint to the organisers

The meeting has nothing to do with MEA membership of the Board of the CMRC

I give up and must get on with more important work…

CS

 

[Undisclosed]

I think the MEA should represent the wishes of the majority of its members. I would like to know what those wishes are.

That would be a fair way to approach this. Poll and do what the majority of members want. Either resign from the CMRC to show that the MEA will not support or condone any BPS research. Stay on board to voice that they do not support BPS research. I don't even know how many active members there are in the MEA, we can't know what the majority think.

I am obviously well aware that there is a small and very vocal group of people on PR who do not like me or the MEA

I have not come across anyone here on PR who does not like you or has said anything to suggest they do not like you, and most people here including me appreciate most of what you do.

What Charles Shepherd has said it actually quite true. Over the years there has been a small group of very vocal people who have attacked both Charles Shepherd and the MEA. It hasn't been so bad over the last few years. In fact, I would say over the past few years the MEA and therefore Charles Shepherd have been viewed in a much more positive light. You don't see it because we remove personal attacks directed at any member. I have some good examples of it in the Reported Post forum.

Do not misrepresent me and my concerns in this way please. If you really want to get into Crawley territory where raising concerns is wilfully misinterpreted into being personal attacks then I will withdraw my support for the vast majority of your and the MEA's efforts

As I said, there have been some significant attacks on both the MEA and Charles Shepherd over the years.

Might be better to avoid all this personal stuff and comment on the reasons that the MEA should leave or stay in the CMRC.

 

[lilpink]

[MEA not only tacitly endorsing (aka 'canoodling' with) BPS school research (including MUS research) and EC's libel of DT but also EC's involvement with this event as key speaker.[/QUOTE]

The MEA was first off the block to send in a formal complaint to the organisers

The meeting has nothing to do with MEA membership of the Board of the CMRC

If CMRC critically challenged the BPS model (as any decent scientists should) .....if they denounced EC's appalling comment on Tuller and the virology blog, if THEY denounced the 'Day with the MUPPETS' which as interested parties they should.......then I might think again

I give up and must get on with more important work…

That says it all.

 

[Skycloud]

A response to @lilpink. Apologies to other users for length. Skip if you want.

I'm beginning to get the impression (as this is not the first time it has happened) that words I have written in separate and different contexts are conjoined to try to force a narrative into my mouth which isn't mine. I find that rather odd, indeed disturbing, in the context of a patient forum. What I have pondered is this:

Canoodling versus collusion ....... (my colloquial observation of) TACIT ENDORSEMENT versus whatever you are trying to imply I'm saying. I've never heard 'collusion' and 'canoodling' ever being used as a synonym of each other before. Quite bizarre. The OED seems to agree with me:

"collusion

NOUN
1‘there has been collusion between the security forces and paramilitary groups’

SYNONYMS
conspiracy, connivance, complicity, intrigue, plotting, secret understanding, collaboration, scheming".

Nope..no 'canoodling' there. So that's that accusation out of the way.

But consider this.....

1. So the CMRC are intent on working towards all this biomed research are they? So much so that they're after 10,000 adults and 2000 child recruits for their MEGA project, a cohort size that matches very closely the size of the NOD database they have already collected (in some/many/most cases without informed consent) stuffed full of their precious psych data to compare any MEGA results with. Mmmmm....


2. Also, let's not forget the BPS School's ever expanding MUS agenda. You (they) may not care much about other patient groups but at least have the sense to realise that they are expanding and not reducing the role of the psych model in medicine to the detriment of millions of people. If in any doubt then look at the PRINCE trials led by Trudie Chalder. We're in cloud cuckoo land if we think that for one minute these people are going to give up on the psych model when biological research turns up any results.....at the very best they will be making even greater efforts to incorporate any new discoveries into their mind/body interaction hypothesis. And don't lose sight of why this is so important - to save the NHS billions of £s in efficiency savings.


3. And how quickly you forget 'A day with the MUPPETS' - MEA not only tacitly endorsing (aka 'canoodling' with) BPS school research (including MUS research) and EC's libel of DT but also EC's involvement with this event as key speaker.

My post has nothing to do with what anyone else may have posted in response to you. You're making assumptions about what I think and where I stand, and putting meanings into my post that aren't mine.

My first sentence was a flippant comment that I am happy to withdraw as it seems to offend you. It was just an attempt at levity that was probably best left out as it was misconstrued. My bad.

I am not using 'canoodling' and collusion as 'synonyms' by the way. They are your words for what you believe the MEA are doing. I have no intention to

try to force a narrative into my mouth which isn't mine.

I was asking for clarification of your use of 'collusion'.

Seriously, the use of the word 'collusion' suggests that CS and the MEA are intentionally and knowingly acting in secret agreement with others in the CMRC to undermine patients best interests. Is that really what you are saying?

My question (not an accusation but a question) was seriously asked.

I am already aware of the things you raise in your points 1,2 and 3.

You (they) may not care much about other patient groups but at least have the sense to realise that they are expanding and not reducing the role of the psych model in medicine to the detriment of millions of people.

3. And how quickly you forget 'A day with the MUPPETS'

You clearly are very passionate about the injustices we face as people with ME, I'm with you on that, I'm not your opposition. Please don't make baseless, insulting and patronising assumptions about me. Perhaps you didn't mean it that way but that's how it reads to me.

For the record, I don't think the MEA being in the CMRC is as important as other issues. Whilst I understand the MEA position, I'm not inclined to agree with it. They might be right though. I wouldn't use the word 'collusion' myself.

edit - length

 

[Stewart]

That says it all.

Yeah Charles, how dare you prioritise your responsibilities to the MEA over continuing a dialogue with an ex-MEA member that you've already taken the time to respond to twice this morning.

 

[AndyPR]

Might be better to avoid all this personal stuff and comment on the reasons that the MEA should leave or stay in the CMRC.

I should avoid personal stuff while Charles can equate me expressing my concerns into a personal attack on him???